Professional advocate and new father, Ady Barkan is only 32 years old when he is diagnosed with ALS, a neurodegenerative condition that slowly paralyzes those afflicted. A covertly recorded confrontation between the ailing man and Senator Jeff Flake goes viral and is used to launch the #Be a Hero movement. Using Ady as both a figurehead and a spearhead, the activist group embarks on a cross-country tour to spread their message and try to affect political change. Throughout the film, we watch Ady lose the use of his speaking voice and motor skills. In the end, the viewer is left feeling heartbroken but hopeful: maybe the voice of an individual can make a meaningful political impact.
The actual filming of the documentary is a mix of fly-on-the-wall and in-the-action footage, some filmed on smartphones. The way Not Going Quietly is edited, however, feels much more like a reality show than a documentary. There are some moments of true beauty, but they end up muddled in the mixed efforts of the film. What could have been a simple, honest, and powerful documentary about one man’s struggle with ALS or a review and continuation of the exploits of disability advocates in American politics ended up an inspiration porn cash-grab.
Ady Barkan is an intriguing individual in a unique situation and he deserves attention, but he also deserves the respect that is withheld from him by the filmmakers and his activist comrades at many points. He is constantly pushed too hard and we can watch his condition deteriorate more quickly as the cross-country trip drags on. Despite claiming to care for him, he is left to sit in his wheelchair for hours on end, misses many chances to bathe, and doesn’t have a physical therapist with him on the trip (Nor time to do his PT). All this added stress and lack of real rest cause him to lose function at an increased rate, and while it is explained that he wanted to make this trip several times, it is disappointing that next-to-nothing was done to protect the man nor the voice which the Be a Hero campaign relied upon.
The biggest disappointment is that the filmmakers recorded a moment between Ady and another disability advocate with ALS in which the younger man explains, “I’d say ‘You’re so inspirational’ but… It’s so chastising, belittling.” The way the film is edited specifically runs counter to this feeling, plugging Ady as an inspiration at all turns and ultimately asking “What’s your excuse?”
The official description of the documentary published online and on the back of the DVD case claims that “groundbreaking interviews are held with Joe Biden, Kamala Harris, Bernie Sanders, and Elizabeth Warren.” They are not lying, Ady did conduct the interviews, but they are not included in the film itself which makes me wonder if the names weren’t just dropped in the hope of raking up passionate liberal’s cash. All considered, Not Going Quietly is not a necessary purchase for disability film collections. Aud: C, P